Clinical Informatics & Outcomes Research Core
If you are a researcher looking to access the resources and services from the Clinical Informatics & Outcomes Research Core, please email info@gynecancerinitaitive.ca
Our Clinical Informatics & Outcomes Research Core provides a wealth of resources to support gynecologic cancer researchers across British Columbia. This team works to provide accurate, reliable and useful data to aid researchers in developing evidence-based research in the prevention, detection, treatment and survivorship of gynecologic cancers. Our Clinical Informatics Unit has a series of data resources, data analytics services and data infrastructure that can be requested by researchers.
Gynecologic Cancer Tissue Bank
The Gynecologic Cancer Tissue Bank (GTB) aims to improve knowledge about gynecological cancer, by making available to scientists across Canada large numbers of gynecological tumour specimens and normal control tissues for studies of cancer biology, detection and treatment. This is one of the largest tissue banks in Canada focused on collecting tissue from gynecological cancers to help support research on how gynecologic cancers begin, what causes them, how to treat them and the long term effects of treatments is urgently needed. Click here to learn more about the Gynecologic Cancer Tissue Bank.
Cheryl Brown Gynecologic Cancer Outcomes Unit
The Cheryl Brown Gynecologic Cancer Outcomes Unit is a population-based database that was established to identify determinants of gynecologic cancer biology and the value of treatment. It collects clinical data (i.e. pathological, treatment, molecular and outcomes data) from patients who are referred to the BC Cancer Agency with validated diagnoses of any gynecological cancers. The Outcomes Unit obtains this data from the BC Cancer Registry and receives bi-weekly updates. Additional data is obtained from patient chart reviews, the provincial pharmacy and the Vancouver General Hospital Department of Pathology.
Molecular Data
A core research resource is the large amount of molecular data generated through years of scientific research. This data includes tissue microarray, whole genome RNA and DNA sequencing, genomic data, NanoString data, Proteomics data, digital PCR data and many more small assay. The Clinical Informatics Unit is working to collect and consolidate this data so that it is stored in a single location and can be used for future research.
Statistics Support
The clinical informatics team offers statistical support and consultation for gynecologic cancer research projects. The team has experience running statistics support for various projects including clinical trials and they can help with preparing grants and other research projects.
REDCap
REDCap is a web-based application for building and managing online surveys and databases. It is specifically geared to facilitate scientific researches with tools to collect and disseminate project-specific data.
REDCap supports regular as well as longitudinal data collections in the form of surveys. Users have absolute autonomies in setting up surveys and survey can be filled in by participants or it can be used as a data entry tool for the study. Data in each field of a survey will be validated (checking format, type, logic branching, etc.) by REDCap so it ensures data consistency and accuracy. Also, fields can be set to auto-filled or auto-calculated and it eases the workload of data entering.
Projects (including all data and surveys) can be exported and re-imported easily from one REDCap instance to another. Also, exported data can be downloaded in a format (CSV, SPSS, R, STATA) that suits further analysis the best. When importing data, all data is checked for issues first and REDCap prevents any problematic data from entering its system.
REDCap also provides researchers with a straightforward browser-based interface to run queries and generate reports, summary statistics of their projects. No technical background is needed.
Users authentications are required. Similar as OpenSpecimen, user privileges can be customized to different levels per study (E.g. permissions can be set to limit access to forms). Issues of security and backup are handled by IT professionals at BC Children’s hospital.
REDCap is a free web application (only requires a browser to access) and support access for multi-site collaborations.
OpenSpecimen
OpenSpecimen is a biobanking informatics platform, which helps track all types of biospecimens from collection to utilization. The browser-based feature makes it quite user-friendly to general lab staff.
OpenSpecimen supports longitudinal data collections: users can define their own event types (E.g. baseline, surgery, blood collection) and collect specimens based on the event. To handle prospective collection, OpenSpecimen allows users to pre-print specimen labels and collect specimens in one or across multiple sites in the study calendar (E.g. screening, pre-op).
OpenSpecimen adopts a hierarchical structure of containers (freezer – shelf – rack – box) and users can create any type of freezer with a configurable hierarchy. Moving boxes can be done in bulk with one-click.
OpenSpecimen can create online catalogs and share data with collaborators. It also helps track researcher’s requests and distribute specimens to the requestor with neat invoicing management.
OpenSpeicmen runs complex queries with an easy-to-use user-interface. Queries can be created by people without any computer science background or any IT support.
OpenSpecimen allows users to customize and configure screens and workflows as per study without any programming efforts.
OpenSpecimen can integrate with other popular databases, such as REDCap, Epic, CoPath, etc. with its REST API. Also, users can connect printers, scanners or their own in-house database with OpenSpecimen.
Online database is held and maintained behind the firewall at BC Children’s Hospital. Users are required to login with password. Moreover, super administrators can customize user privileges per study and per research group.